This Is MS Multiple Sclerosis Community: Knowledge & Support

nunzio or anyone else, i know that the question has been asked if the ccsvi dr.'s are aware of ctos. i have sent info. i'm sure others have too. anybody aware if any of them are looking into it or even better plan on makeing it a part of their quest to figure this all out.

I did the opposite. I have sent the link to ECTRIMS call for papers to Dr. Recarte (Spain) and Dr. Poblete (Chile) in the hope they wanted to present a paper. Dr. Recarte never replied and Dr. Poblete sent me a small email back saying just thanks. I don't know if any of them will present anything.

If anyone in this forum knows more people involved in CTOS, ECTRIMS is a good conference to tell them about. Call for papers is over but they can make exceptions. There will be a presentation about CCSVI and it really makes a lot of sense to present related things.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

THIS THREAD SHOULD BE STICKED

One of the well known pioneers who was treated for CCSVI in Egypt later developed a new problem; her azygous vein was pinched between her heart and her spine. The IR corrected that with a stent, but I have to wonder if the problem was due to her spine being out of position. Obviously something was out of place, either her heart or her spine or maybe the azygous. If it's her spine, could that problem have been corrected by a chiropractor or a medical doctor who specializes in the spine?

I've also wondered if a blood flow problem which looks like CCSVI might in fact be on the arterial side. In that case the downstream vein might not receive enough blood to keep it open. So it collapses like a firehose, and ballooning it does no good.
But that's just me thinking out loud. I can't prove any of it.

Of course if the blockage is in the artery or if a blockage is due to pinching from bones I think it would be apparent in the fMRIs that Haacke is doing. But I've heard no mention of it from that camp.

It's my impression that the arteries are well studied and that any such condition already has a name and a treatment course? That it's just the veins where they thought the blood would find its way out and the concept of CCSVI being pathological is challenging that notion.

It seems to me that the doctors are amazed to see that there is much to learn. That will change in the relatively near future. But right now, they don't know what they don't know.

That leaves pwMS to decide whether their health issues are severe enough to be treated now or if they would be better off waiting until the IRs get a bigger, better data pool to guide them.

As someone who was undertreated last summer, I have spoken to three IRs and I'm not quite ready to try again. Each doctor has expressed his confidence in his skills, but also admitted that they're still using trial and error approaches. Others who make a different choice have my thanks for contributing to the knowledge base.

look at almost every MR scan that shows stenosis. the vein looks like theres pressure causing stenosis from only 1 side of the vein, some veins looked pinched. why is it narrowing from one side only? think about the causes for some of these stenosis.

cece, you asked the question about arteries studied, who knows if they did or not

have we allowed ourselves to shut the door on anything else besides CCSVI because its so promising, what about the people that had restenosis, were CCSVI treatment didnt work for them or their veins are open but they didnt benefit.

heres the list of what im gonna hopefully do:

1. Upper cervical Care (Since im already doing it)
2. get tested at PI
3. based off test, where blockages are.
TOS and/or CTOS
4. CCSVI treatment

the upfront cost may be more but i think it'll pay off in the long run

@Shye....was specifically was 90% better?

That's great that some of you had good experiences with the upper cervical chiropractic. The upper cervical connection makes a lot of sense. For me however, it was a disappointment. I had suffered whiplash in a car accident, had a few falls, etc, so I thought it might help me. It didn't hurt me, but it didn't help me at all, either. I tried it for 5 months, three times a week (maybe twice a week the last month).

lauraV, have you checked out the ccsvi and ccvbp thread? maybe uprightdoc can help.

My UCC helped with walking, fatigue, balance, eliminated my heat sensitivity and lower back pain but it was on and off

Thanks for the suggestion, civickiller. I'll look at that thread this weekend.